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Sharing a dementia diagnosis

When someone you know and may be close to is given a diagnosis of dementia, it can be difficult to know whether to tell other people. You may want to protect the person you support, or you may be worried about how people will react.

In this section we talk about why it can be helpful to let other people know about a dementia diagnosis. We suggest practical tips to help you make decisions about who to tell, when, and what to share. We also help you to think about how you can take those first steps to sharing the dementia diagnosis with others.

Is it a good idea to tell my/our/the persons’s family and friends about the dementia diagnosis?

Sharing a diagnosis with friends and family can be a positive experience!

Sharing with family and close friends can explain changes that others may have noticed in the person you support and can avoid misunderstandings.

Sharing the diagnosis with others may help you feel more confident in asking for support, and others may be more forthcoming in offering support.

It is important to remember that dementia does not need to define your life.

Should I/we/the person who has been diagnosed tell other people such as their employer, and other health professionals (eg dentist, optician etc) about their dementia diagnosis?

When a person who has been diagnosed with dementia is still working, a decision needs to be made about telling the person’s employer. Decisions to tell an employer, or others in the workplace who may need to know, need to be made by the person with dementia or as a joint decision.

Many people diagnosed with dementia are in paid or volunteer work roles and want to continue. Working can be great for physical and mental well-being.

The person you support might feel worried or anxious about telling their employer or colleagues about their diagnosis of dementia. This is normal. However, it is important to know that many countries…, have laws that protect people with disabilities, including dementia at work. Human resources personnel can usually help with managing conversations as well as provide details on the rights of the person with dementia at work.

It is important for the person you support to tell other health care professionals, such as their dentist, optician or at hospital appointments about their diagnosis of dementia. Knowing this information may help them to make adaptations to the service they provide. For example, your partner with dementia could ask for a written summary of their appointment and what follow up actions are required like arranging blood tests or x-rays. The person you support could also ask for a longer appointment or arrange to have you or an advocate accompany them to the appointment.

Health care practitioners rely on having an accurate medical history to deliver the best service for you. This includes knowing that the person you support has dementia.

Should I/we/the person who has been diagnosed let people know about their dementia diagnosis out and about in the local community?

Telling people in the general community

It’s important to keep socially active and connected with other people. (SIGNPOST TO SECTION 5) There is good evidence which shows that staying socially active is good for your brain – whether you have dementia or not! Trips out into your local community are a great way to keep active.

Giving the person with dementia space to be independent can be difficult if you are concerned about how they will manage day-to-day activities like handling money, finding the right bus stop, or ordering at the local café. However this can be important to support their independence and help you both to do things separately.

Having key people in their local community who know the person you support has dementia or cognitive problems means they have an opportunity keep an ‘eye out’ for them and assist if needed.

Importantly this needs to be balanced with the wishes of the person with dementia and how much they want to share and who they wish to tell.

You can plan together who and how much you want to tell by using the “friendship circle exercise” [LINK THIS]

How can I/we/the person who has been diagnosed let people know about their dementia diagnosis out and about in our local community?

While some people with dementia are confident about telling others when they think it will be helpful, others fear discrimination or stigma.

You, or the person you support can ask for assistance from people in your community without having to talk about dementia or their diagnosis. Geoff takes the same bus a couple of times a week to and from the shops. He simply asks the bus driver for assistance in identifying his stop each trip. The driver has been happy to help.

Some people with dementia and care partners find carrying an ‘assistance’ or ‘help card’ is useful. This credit card sized card discretely lets people know you have dementia or memory loss and may require their help and support. You can see an example of an assistance card [here – link to the tool.] You can make one yourself or [insert name and contact of national dementia organisation here] provides these cards free of charge. Read James’ experience of using an assistance card to help other people to understand what support he needed when out shopping https://www.cmaj.ca/content/183/3/E138. James found “When people read something, they pay more attention. A card looks a wee bit more official”

What if I/we/the person who has been diagnosed don’t want to share their dementia diagnosis?

It takes time to come to terms with a diagnosis of dementia. Some people living with dementia may not be willing or ready to discuss the diagnosis and what it might mean for them, even with their partner or spouse.

There are a number of reasons that a person with dementia may not be willing to talk about dementia or plan for the future:

  • They may need time to come to terms with the diagnosis

  • Ignoring issues may be how the person usually copes

  • Denying the diagnosis could mean they are fearful of the condition

  • They may lack awareness of their condition; damage in certain parts of the brain may prevent their ability to understand their condition

LINK Click Here to a short article that describes these topics in a little more detail with ideas for steps to take to navigate this delicate situation.

Is there any advice to help me to communicate well with the person?

Changes in language are very common in dementia (SIGNPOST HERE TO 1A?)

Changes may involve the ability to find the right word, produce speech and/or understand what is being said.

Some types of dementia affect language more than others. Speak to your GP about language if this is an issue. Your doctor can refer you to a speech pathologist if needed for specific advice and information. A GP Chronic Disease Management Plan may be available to help organise these services.

What does not change is the ability of the person with dementia to understand non-verbal language. Non-verbal language includes facial expressions, posture, gestures, and tone of voice. Experts tell us that non-verbal language is a major part of communication and can be more important than actual words!

Click here to read the Dementia Australia helpsheet on managing changes in communication {Link – https://www.dementia.org.au/national/support-and-services/carers/managing-changes-in-communication].

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